Apology for a Harsh Post

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EyeoftheWild

Well-known member
Jro, today I posted something on another thread, which was directed to you, but I decided to delete it. Like anyone else on this board I only wish you the best. I have my own ways about how I help, and I will be the first to admit that I have failed resoundingly at times. I was harsh with you in my last post and I would like to apologize for that. My sentiments haven't changed, but I do believe that you are just trying to do the best that you can and to make sense out of your life the best way you know how. I have had my own struggles and so I am no stranger to the various coping mechanisms that one uses to get through a day. I have had many arguments on this forum. Some initiated by me and some by others. At one time, there were most definitely two camps, and the fighting was quite acrimonious at times, as well as fun. (at least for me) :p I wouldn't have to say much, I would throw my bone out and then watch the fur fly as everyone tried to justify their point of view. We all see things through our own filters, and so it is that mostly people just argue about their own insecurities and seldom to the point at hand. This kind of arguing/coping only serves to keep us as people stuck. Each question brings up a new question, and so, in the end, nothing is ever resolved. At some point we need to take a stand and believe in ourselves.Before getting bfs I was the ultimate people pleaser and avoided confrontation as much as possible. I seldom argued with people, because I didn't want people to dislike me. This led to me feeling stuck, and in turn powered me down into an uneasy complacency. I had begun my life as a passionate person, full of vigor, but I became functioning shell. Oh, not on the outside. Part of the conundrum of feeling inadequate is to make others believe you are capable. Not through heroic deeds of your own, but through helping in the deeds of others. It really amounts to being too afraid to be passionate, because that might cost us, it might leave us vulnerable. So, in my case, I plugged along, being everything to everybody, not even realizing how miserable I was, or how much of my life I had wasted. Boo Hoo on me. :( :LOL: So, enter bfs and my psyche gets a shock. Such a shock that momentarily I am naked, vulnerable, authentic. I grasp that it is my life, not any one else's. I don't need anyone's permission to live it and sure as hell don't need doctors poking and probing me when they are as deluded as the next person. Life was in the offing and I was going to taste of every sweet thing that came my way.Have I faltered? Hell yeah. I have crashed and burned a few times, but I know now what is worth putting my energies to and what is not. And what is not, my friends, is using up our wonderful, miraculous, stupefyingly magnificent, psyches with worry over improbable connections and infinitesimally tiny maybes. Time isn't stopping for us, or haven't you noticed? ;) Basso
 
Basso,"using up our wonderful, miraculous, stupefyingly magnificent, psyches with worry over improbable connections and infinitesimally tiny maybes"P L E A S E listen to this! It make so much sense! Life is for living, not for worrying away! If you have been told that you are ok, then believe it - stop lining the pockets of the insurance companies and live your lives. Our potential is huge and many of us on this board are wasting it needlessly. Time is ticking and I gave a year of my precious life away to this pointless fear. Live, love and be loved - best cure on this earth for bfs. It won't go away, but you'll stop caring. Jan
 
Jro - You have been a lifesavor for some many people on here. Thank you for all your posts... Thank you to everyone, including Basso, for posting with honesty and integrity.
 
Thanks for your post, Basso. We all have different approaches and points of view based on our experiences. I am most offended when people attack someone personally or someone's motives rather than the content of what they are saying. No information or advice will be helpful to everyone. When people post information, the reader needs to evaluate its credibility based on the references cited, the poster, and any other information that may be relevant. If the information has some credibility to the reader, the reader has to decide for themselves whether they want to ignore it, file it away in their brain for later, or act on it somehow. I feel this board is about sharing information and that information should not be censored even if you feel it is not helpful to you because of its lack of credibility in your opinion or other life philosophy. People should respect the ability of others to decide for themselves how credible information is and to process it for themselves. I think the best way to attack information is on its merits with facts and logical reasoning. I never post information on here just to scare or impress people. I am actually shocked given what most understand this twitching ordeal is like that anyone would think someone would have time to waste on such petty pursuits. I actually want help for my symptoms and want to help others if I can along the way. I could not care less about whether I impress anyone. I personally believe that the purported connection between neurological problems and cancer is a relevant one both for possibly treating neurological problems, screening for possible cancer, and understanding the possible connection between the immune system and neurological problems that are not cancer related. If you agree, you can research the literature on this, discuss it with a doctor, or ask those who also agree what they have learned. Even if you fully understand all the medical knowledge on the matter, it may not make any difference in what happens to you and maybe will just waste your time. But it may also lead to something worthwhile. If you do not agree, then you can ignore it all.
 
I am one who is guilty of wasting a good year and a half worried over an improbable occurance. At the same time there is a difference between worrying over something seen on google and worrying about what a doctor has diagnosed you with. Negative thoughts may make you ill but positive thoughts will not cure you. My mother left us far too early because she ignored symptoms and believed her first doctor without asking for a second opinion. She missed my wedding, seeing her grandchildren and growing old with my dad. For many years we all said "If only she had been more persistant in getting diagnosed." She had a common cancer, very cureable if caught early. Sandra D
 
Sandra,Thanks for sharing a poignant example of how identifying when to persist and when to back off and stop worrying does not involve applying a simple universally agreed on formula that will always spit out the exact way the proceed. The factors involved are just way too complicated, highly individualized, and nearly impossible for someone else to second guess without being extremely close to the situation and knowing all the facts. My 56 year-old mother in law had a melanoma-in-situ removed from her face a few years ago. The spot looked like a typical roundish sun spot that was growing a bit. Nothing sinister looking at all but growing some. She is hypervigilent and had it looked into. Even her dermatologist was surprised it was melanoma and did not recommend biopsy when asked his opinion. She insisted and it was caught early and is one of those cancers that is virtually curable in those cases. This summer I noticed my mom has a similar looking spot on her face and noticed it was a little bigger than the last time I saw it. It is also a little darker than most sun spots, which makes me nervous. My younger siblings who live near her (I live across the country) looked to me to get her to have it checked. I brought it up to her and she refuses and does not want to even talk about it. It does not bother her she says and no matter how delicately I put it or how routine and reassuring I described the process, she did not want to hear it. My mom is a nurse but when it comes to health she thinks things are better left alone. I love my mom and this worries me but she has the right to do what she wants to do. I struggle with how much to push versus whether to let it go so our time together is happy. I have let it go for now and enjoyed a great visit with her and my dad this summer and plan to have another great visit at Christmas. None of us have a crystal ball. We have to look at our own and our loved ones' situations and just do what we think is best given the situation as presented to us. When someone is debating how to handle a health matter, outsiders should offer their opinion if asked but then support the other person based on a respect-based premise that there is no one right answer and that we all have to do what we think best in a difficult situation where the right choice is anything but clear and is sometimes still not clear even in retrospect. My heart goes out to you Sandra for the loss of your mother. For me there is no stronger bond than the one I have with my mother and the thought of ever losing her is probably the most difficult one I could ever imagine. Krackersones
 
I do not agree with the notion that "we all have our experiences and points of view and people can make up their own mind." Why? Because, the bulk of people that come to this board are clearly suffering from anxiety and many are on drugs to ease their troubles. In a highly charged, highly emotional state, it is difficult, if not impossible, to disseminate information in a dispassionate manner. No one has ever said that facts should not be discussed, or that discussion surrounding bfs should be limited. The people who say that are usually the ones who are handing out all manner of misinformation, or in some cases, terrified people who are hoping against hope that there isn't yet one more thing to worry about.In the entire history of this forum, no one, not one person has come down with any illness where their twitching was a factor. The empirical evidence of that is enormous. That leads me to conclude that anyone with an actual serious disorder is not finding their way to this forum. Instead, they are getting treatment for their illness, because they have gotten a definitive diagnosis a long time ago. No doubt, if they knew of such a forum, they would scoff at our "silly ol' bfs," as LisaLM used to so aptly say.There is a tormented, monotonous tone to the presentation of "facts" by many lay-persons here.What I don't hear from those who think only a discussion of "so-called" facts is the only way to go, is any kind of thought to their mental health; let alone spiritual side. They brush aside any notion that they themselves might be unhealthy in the way they think. Further, they don't have medical degrees, and secondly, their own states of mind preclude them from any dispassionate discussion. If you were a neurologist, dealing with people everyday who had varying degrees of maladies, wouldn't you feel somewhat dismissive of people who were well, and asking the same thing, over and over again? I know that I would. We can't arm ourselves with every eventuality, or be informed to the point where we are secure that nothing will be overlooked. At some point we have to have faith in ourselves, and faith in the expertise of others. I would be the first one to say that we must be advocates for ourselves when we feel something is really wrong, but that doesn't mean I'm going to start reading medical textbooks in order to educate my doctor. Yes, be your advocate in all that means. Advocate for your right to live without fear. Advocate for yourselves when you feel your emotional and physical needs are not being met. Advocate for our psyche; that powerful phenomenon that emanates from our brain, so that it can be free to view life as an amazing gift, instead of something to be guarded against.Connections can be drawn from anywhere. If any of you remember Erik Von Daniken and his book "Chariots of the Gods," he made all kind of amazing connection that seemed perfectly plausible. The only problem was...it was all bullshyt. In the medical world, or academia, it is "publish or perish." Scientist, doctors, professors, etc, search for things to write about, and draw all kinds of connection and conclusions. Enormous research money is at stake, as well as ones prestige. Most of this research is useless, I know, I have worked in academia for many years. I have even written up grant proposals, full of buzz words and nonsense, in order to procure money. The more convoluted, the better.So, what do we have? We have a life, our only life. We have the right of course to chase our tails, if we so choose, but wouldn't it be more fun and edifying to follow the dictates of our own hearts?Basso
 
Basso,I agree that our thinking about "facts" is always impacted by our mental and emotional state of mind. This is why we are human and not machines. But there is nothing we can do about this. The fact that it is true does not always mean someone else is better equipped to tell us what to do. Their opinion and thinking is also impacted by their mental and emotional state. If people cannot be allowed to make up their own mind, then who decides who gets to make it for them? I agree that medical information and advice is very frequently misleading, unsound, and even fraudulent given that it is a product of people who are motivated by all the things you mentioned (the desire to not be burdened, greed, and ego). This is why I cannot have total faith in the expertise of anyone. I try to strike a balance of informing myself to some degree and probing my doctors about their knowledge and then deciding whether to follow their advice. I tend to be the most comfortable with the docs who like and compliment me on my questions and are not afraid to tell me I told them something they had not thought about but is relevant or that they were wrong.Your observation that no one on the board has come down with a serious illness associated with twitching would perhaps more accurately be stated as no one on the board has come down with a serious illness that has been conclusively proven to be associated with twitching. There are lots of things that are yet unknown in the field of medicine, especially neurology. This is something I think most neurologists would agree with. I also take issue with the term "serious illness." There are many, maybe even you, who are not at all bothered by their symptoms. I am. Some others here are also. Physical discomfort cannot be fully understood except by the person experiencing it. Even though I do not have a diagnosis of what someone would say falls on the list of "serious illnesses," I do have symptoms I would rather not have and take away some of the quality of my life. I get to decide whether pursing relief is worth the mental and emotional downside. No one else can decide this for me. You can speculate that I am suffering more mentally and emotionally than physically but you really do not know that about me or anyone. So go ahead and keep offering your advice. I think it is very good for those not really suffering physically. But please leave some room that there are others who may be making other choices that are different because their situation is different than what you assume.
 
Basso,Your deep philosophical ideas about everything have there place. But there is also a place for wanting information that leads to real physical improvement. There is nothing wrong with wanting this. Of course, there are degrees of everything but you speak in such broad generalities, which I assume you know you are doing. Sure I worry. Sure I worry because of things that happened in my childhood. This is true of everyone here and yourself. You can address these issues and you have good advice for doing that but doing this does not mean you cannot also go to the doctor and seek information for real physical problems. You think because I do this I have a screwed up life. That is your judgment and I get it. I happen to not feel unhappy with my life and if that is true what is the problem for anyone else? You say people do not make up their minds and remain silent. There is no such thing as not making a choice with an issue. Inaction is a choice and has consequences. Sure people agree just to placate and and of course we like it. But people sometimes also agree because they do and would say so if they did not. You may never know which is the case, but I and most are not so naive as to not understand this. You also seem to think that if you seek medical help or complain of a symptom, you are being a "victim." Obviously that word is used with such a negative connotation. I tend not to overanalyze this aspect of my behavior. I am doing what I am doing because I want to and I feel it helps me. When that ceases to be the case, I will stop. I think consciously about my actions and do not operate in a haze. Having a physical symptom or type of illness does not make anyone a "victim" in the sense you use it. It makes them human. It is ok to want to feel better physically. It is ok to want to protect your health. You are really too quick to lump everyone who does these things into the hypochondriac, pathological category. You see one side of people on this board so maybe this is why these judgments make sense. But we all have much more to our lives that what is on this board.
 
Basso,I'm started to see better where you are coming from. We can all benefit to some extent from your advice, some more than others. And some may need it more at different times. I appreciate your optimism about all of our symptoms and where they are headed. I really do not have an extremely pessimistic outlook about bfs or my own conditions whatever it is, although my actions may suggest otherwise to some people and I can certainly understand how that impression is made. I am glad this discussion has taken a different tone. I engage in these dialogues because I am analytical as you have noticed (maybe too much for my own good, of course) and I believe that these discussion help me clarify my own beliefs and allow me to understand and learn from others. I am a work in progress too as you described yourself. The line between obsession and prudent advocacy is fine at times and also in the eye of the beholder. We all have to continually monitor ourselves on this issue and hopefully we will stay on the right side of the line most of the time.You have some very unique and positive qualities that many (including myself) appreciate. I hope you are able to find something you feel passionate about other than bfs and the human drama surrounding it. I will be interested to hear about it when you do. I would recommend teaching but I do not know you well enough to know if that would make sense for you. For me, there is nothing else like it.Krackersones
 
Personally I find this thread absolutely fantastic and I hope everyone reads it. Their is a real message for all of us and thank you to you for sharing your views.I can see that in the beginning and for way to long I was stuck, but quite some time ago with a change in thinking I saw the light. ;) Sharon
 
Jan,You started it in a sense but I am sure the discussion would have been triggered in some other way eventually. I think discussion like this is healthy to some degree. I have also always been prone to argumentation. I drove my parents nuts from the time I could speak with it. It is probably one of the reasons I do not have my own kids. One like me would drive me crazy. In college, I would sit in the dorm halls until the wee hours of the morning discussing all manner of issues with anyone and everyone. I remember those days fondly. It helped me learn about myself as I learned how others perceived things, which was often so different than the way I did.Krackersones
 
Yes, well that is exactly why this thread is of interest. It shows two different ways of thinking, none of which in my view are wrongjust different ways in which we all react due to our perception/life experiences etc. Sharon
 
Bill,Thanks for adding your views to this thread. I love to know that you are cured after 4 years. I always hope for these symptoms to go as mysteriously as they came. I also really do not need to know the "cause" for any reason other than to get rid of the symptoms. And I actually have very little fear compared to the first few months with this. When I go to the neuro, it is usually a somewhat relaxing experience. I am a big fan of people who use their talents to make a real impact on the lives of others. My neuro could be a total self-serving fraud for all I really know (we never really know anyone), but for now what I see from him (and I am a somewhat cynical, skeptical person) is someone who has devoted himself to trying to help people with neuromuscular conditions live better lives. He loves to share stories of how he took someone from a dx of ALS to a person with a full active life with a dx of a rare non-ALS condition. He may do this just to glorify himself and massage his ego but from what I observe he actually does care about people and if he has helped someone go from immobile to a full life then he is a hero in my book.Krackersones
 
I think you are completely right Basso. It seems from others that once they get over it mentally and move on, the twitching minimizes. rarely goes away completly, but certainly is not a bother. And for me, when I am distracted and busy and not worrying about it, I dont notice it nearly as much.But I have to ask. How can you say "leave the board" when after all this time, you haven't left? I don't want you to leave, I think you over some good advice to people, and everyone appreciates this. But nonetheless you stayed. And if we all leave, who will you write to?What would you do with all the extra free time not being used to argue with Krackersones? Ha haa.Keith
 
Hey, Keith. As you have pointed out, I have been here way to long. :p I just can't bare the thought of anyone having more posts than me. :LOL: Actually, I have left the board for periods of many months. And, when I leave I don't even check it out. Then, some rainy day will come along and I will find myself wondering what is going on in bfsland, and "boom" I'm writing a post or two. The interesting thing is that even though the posters will be different upon my return, the worries are ever the same. This doesn't minimize in any way the anxiety or suffering of the newbies, but with my perspective of years, I know, absolutely, that everyone is going to be fine. After four plus years of this stuff I find bfs boring. I never tell anyone about it, except here, and it is a non-factor in my life; except that it gave expression to an awakening. For me, that is the only relevant part of bfs now. It woke me up by shaking me up. It jarred my complacent ass to go in a new direction. The only problem is, once the passion for bfs faded, I lost a certain momentum to change. Fear can be a great motivator, which in turn can lead to passion for the everyday. When we are at the beginning of something, when everything is new and we feel like teenagers again, we have hope. Our dreams emerge again, ones that were long forgotten or suppressed, and we suddenly have renewed purpose in life. It is, in a very real sense, a love affair. So, bfs can be a starting point, a launching pad for a new way of perceiving our lives. But, it can not be a raison d'etre unto itself. We have to finally get in touch with our inner-truth, our authentic self, in order that we may activate our lives in affirmative ways, and then live lives of passion.Basso
 
Thanks Basso.Its true, on the days when I am sure I am going to live, its like I have a new lease on life. A sort of elation.Only problem is when that new twitch comes along - It can really shake your sense of fortitude. I will say this. These last few months have been scary. But they have also put things in perspective for me. After all this, I just might be the better for it.
 
Bill,I do think mental and spiritual health improves a person's physical experience and quality of life and depending on what "disease" you have maybe that improvement will "cure" you. However, taking this point-of-view to the extreme implies that those who die or suffer from a "disease" could "cure" or could have "cured" themselves and are therefore responsible for their fate. I reject this position although if you agree with it I respect your opinion. I see disease, illness, and physical pain as part of life that must be dealt with eventually by all. Some deal with it better than others. But in the end, our physical selves deteriorate. I think you said you believe in reincarnation, so you probably have a unique perspective on this undeniable eventuality.I am not cynical about life just about the motivations of doctors and the medical system. I keep my critical thinking cap on whenever I have to absorb information and make choices about how to approach health decisions but I still come away with optimism about the goodness of others most of the time.We all face the same anxieties and fears and come to our own understandings to cope with them. I am always interested in and appreciate the views of others, even though I do not necessarily agree with them completely.Krackersones
 

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